Nancy's Update

Yesterday was another good day at the clinic. I checked in, waited a while before they took my labs, waited for the those results and found out that I still am maintaining a platelet count of 21 !!! They want to see if I can hold at this level by myself, so I didn't get a platelet transfusion. I didn't need a red blood cell transfusion yet (borderline) and I turned down the magnesium transfusion since I wasn't getting anything else and I promised to take an extra magnesium pill !! I left with no IV's !! Woo hoooo...

I'm still hoping that I turned the corner on the whole low platelet thingy (that's the official medical terminology for what I had.) I had the problem since mid-August. I go back tomorrow, Sunday, to get my labs drawn and have possible transfusions.

Have you ever seen a baby monkey? My hair is starting to grow in a little bit, and it is growing straight up kind of like baby monkey hair. Only, it doesn't seem like hair, it seems more like fuzz. It's very short and I hear it's going to take more than a year before I can do anything with it. Hair grows back at different rates and thickness, fullness, etc.. depending on the type of chemo the patient had to undergo. Since my chemo was the strongest, it's growing back very slowly and sparse. I think someday, I may even accomplsh the dreaded combover.. ha ha

Thank you for continuing to follow my progress... love you all, nancy

Yesterday, Mom and I spent a good part of the day at the City of Hope. I needed an infusion of Magnesium again, but the good news was that my platelet count didn't drop all that much from two days prior. I started with a platelet count of 21 !!! Even all the nurses in the clinic were a buzz about this! I'm hoping I'm turning the corner to this whole platelet problem. I took one unit of platelets anyway in hopes of getting a big boost since the platelets were Scott's and perfectly HLA and type matched. Thank you Scott!!! I got a boost to 37! Also, we're hoping to not come in until Friday! Wow, two days off!!! Woo Hooooo!

I want to call Scott my hero, but I realize that you are all my heroes. Thank you for the tremendous amount of support!!!! I'll never be able to appropriately thank all of you for your blood/platelets, meals, cards, emails, phone calls, thoughts and prayers! love you all so much, nancy

Mark and I spent Sunday morning at the clinic again. It was the shortest visit in recent history lasting just over three hours! :) I checked in and they drew my labs right away. My platelet count started at 12 and with one unit of HLA matched platelets LC63637 it spiked to 29. They let me go after the last count was back! Since I received "the works" on Friday, I didn't need red blood cells or magnesium. I got to spend the afternoon and evening at home. (After a clinic visit I usually arrive home at or after dinner-time.)

Last Friday, I forgot to include in my blog that I received a unit of red blood cells unit #63587. That helped me not need red cells yesterday (Sunday)! Thank you!!!!

I really want to thank you for your platelet and blood donations! You all have helped so much in sustaining me over the past four months. Yes, today I'm four months post-transplant! I do realize that the City of Hope Hospital is not close to anybody. I know that the traffic is horrible and know how long it takes to give a unit or two of platelets or whole blood. I appreciate all of you who have traveled from near and far to directly donate your blood products to me. I wish I can thank each and every one of you in some way. Please know that I'm forever appreciative and may not be here if it weren't for all of you.

My white count is still hovering just below or at low-normal level which is good. We're just waiting for the red blood cells and platelets to come up. We just have to be patient.

Thank you again for being so supportive. I feel fortunate to be surrounded by so many loving friends and family. love you all, nancy

I still continue to receive matched platelets every other day. Yesterday, Friday 9/22, I started with a platelet count of 5. They infused me with a matched product that the City of Hope purchased from the American Red Cross. My platelets went to 17. Then they chased that with my mother in law's platelets which spiked to 33! Yeah... go mom. I also received a unit of red blood cells from the blood bank at City of Hope and an infusion of magnesium. It was another long day at the clinic, but I since I got the "works" I won't have to return until Sunday.

This platelet problem is going into it's sixth week. In hopes of retaining a decent platelet count, we're trying cutting down on some of the medications and increasing others to see if we can find a good balance. The doctors are still running tests to see if they can pinpoint the cause of the platelet destruction and platelet refractoriness. The problem can be one of maybe 200 different viruses or a reaction to something else. They can't possibly test for all these viruses but they are doing their best to isolate it.

Thank you for continuing to follow my blog. Thank you for your continued thoughts and prayers! love you all, nancy

Well, I thought I was improving. My counts this morning (and bloody nose) tell me otherwise. I started with a platelet count of 7 again today. They transfused me with a unit of direct donated but non-HLA matched platelets and my count went to 19 (LC63500 -Thank you). That was a good boost from a non matched unit. Then another unit was just finished being processed so they gave me an HLA matched platelet unit #LC63504 which boosted me to 35. They told me if I took a red blood cell transfusion today, I would not need to come back tomorrow unless there was any bleeding, so I got a unit of packed red cells - also directly donated LC63569. Thank you so much for all of the donated blood products. You are all holding me together!!! Additionally, I received magnesium by IV and we called it a day (something like an eight hour day!)

After leaving the hospital, Mark and I went down to the donor center where Mark's mom was donating platelets for me. I was finally able to meet some of the awesome nurses that you all have told me about. Most of them know about me because of all the support I received from all of you, but I haven't gone in there since before my transplant in May. It was a pleasure to meet your favorite nurses.

Unless I have more bleeding problems, I hopefully won't need to go back until Wednesday! I hope the doctors can figure out this platelet problem. It's very frustrating and draining spending long hours at the hospital. All I'm doing is lying there in a bed or chair that reclines, getting IV lines changed in and out, and getting premedications to different IV's, but for some reason it's exhausting.

My prescription refill problem from Saturday is finally resolved. My delivery came this morning when I was at the City of Hope. Thanks Janice for loaning me your anti-rejection pills. I've sent some back to you in the mail.

I thank you all for keeping up with my blog. Most people think that since I'm home, I'm doing well. Actually, I would be doing quite well if it weren't for this continuing platelet crisis. I bruise very easily but most bruises are on my arms and legs. I still have to be very careful. I know this will pass... it's just taking longer than I'd hoped. Take care all, love, nancy

As promised, yesterday, the blood bank had two units of "B" matched platelets ready for me. My reading first thing in the morning was 9 again. After the first unit of platelets were transfused (lC63462) my count went to 21. That's the highest it has gone in a long time. Since I wasn't going in today, Sunday, they infused the other unit of platelets (LC63472.) After that, my count jumped to 39! I'm thinking that maybe my platelet problem is starting to turn around. I'm hoping that whatever it was that was causing the depletion is finally clearing. My count has not gone up to 39 in over a month even with matched platelet products.

I believe these two donors were found by the City of Hope through their donor program. I don't believe they were friends or relatives but I could be wrong. At any rate, I'm thankful to all who have been trying to give blood products. It was very important over the past month that I got some that were matched. Due to high risk of hemorrhage, I would have ended up in the hospital if the platelet transfusions didn't help!

I'm on 28 pills a day and have kept up with my timing and dosages of my medications with the help of a journal. Keeping up with the refills is another job. Some of my medications are by mail order and the City of Hope won't fill the prescription. So, I make sure that I order well in advance so as not to miss some important medications. I triple checked that I would receive a delivery of one of the main anti-rejection drugs on Saturday. I was assured that it would arrive and I even checked to see that it was billed to Blue Cross online. Well, guess what? It didn't arrive on Saturday as expected. I only had enough pills to get me through half of Sunday. My friend, Janice Wong, came to my rescue. She is 11 months post transplant and takes the same drug. She met me and loaned me a few pills to hold me over. THANKS JANICE! You Rock!!! By the way, Janice looks fantastic!!!

Thank you all for hanging in there with me. These past few weeks have been trying for me and for those transporting me to and from Duarte. There have been near daily appointments and most of them last all day long! It's really quite exhausting. Mark will take me tomorrow... we'll hope for a starting platelet count in the teens or higher!!!??? Thanks again! Love you all, nancy

Well, it was another very long day at the City of Hope. Mom picked me up at 7 am and Mark spun by after work to take me home. We got home at 7:30 pm. The days get so long I told mom she should leave since Mark was picking me up. I think she finally left at 2:30 pm.

The good news is my white count is still holding at or around the low normal level. My platelet count this morning was not at the rock bottom reading. It was at 9 and after one unit of unmatched HLA platelets it went to 14. They were not going to infuse another unit of platelets because two HLA matched platelet units are to be ready tomorrow (Saturday) morning. So, I'll be in there again at 8 am tomorrow... whew. I also received a unit of A+ packed red cells today LC -63488, which was directly donated yesterday by my cousin Eileen Kato. Thanks Eileen. It couldn't be any fresher!! : ) They also infused me again with a product called GammaGard which are antibodies to help my immune system. This infusions usually lasts 2 1/2 to 3 hours. Hopefully, tomorrows appointments aren't too long.

I can't believe I'm going in almost every day again. My doctor asked if I'd like to stay at the village since I have so many appointments. Obviously, I declined! I'd much rather be home! The drive isn't that bad and I need to be with my family.

Thank you for keeping up with my blog. Thanks to all who have donated red blood cells and/or platelets. Thanks to everyone for all of your support. love, nancy

I started today with a platelet count of 7. The donor center indicated that one unit of HLA matched platelets were ready and that a second unit from the same donor would follow, if needed. I got a bump to 13 (LC63431) with the first unit, however, we waited for over two hours for the second unit. Some miscommunication occurred and there apparently was no second unit from the same donor. So they were going to start to look for another platelet unit which could take possibly another several hours.

At that point, I needed to leave. I have never asked to leave early, reschedule or cancel an appointment. I have been very good about my appointments, arriving on time and most of the time arriving early. I missed a lot of my kids events over the summer and couldn't bear to miss this one. With that being said, I left and was able to take Andrew to take his driving licensure test at the DMV. He passed with flying colors! Andrew is on the Varsity basketball team at Cypress High and can now get himself back and forth to school, practices and games. This is a load off of my mind since I spend so much time at the City of Hope. Scott has been unable to drive Andrew to school because he has a Zero period and Andrew starts at first period.

So, the day wasn't a total loss. I evaded hospitalization for yet another day, got enough of a spike from the one unit of platelets (thank you!) and enjoyed taking Andrew to the DMV. Tomorrow morning, I'll pick up where I left off at the hospital. Watch out if you live in Cypress, Andrew is on the road. : ) love, nancy

Well, I've come to the point of being frustrated with my platelet counts. I had a bloody nose twice last night at 12 midnight and 4 am. I had another one again today at the hospital which lasted over 2.5 hours. If I can't get my platelets over 10 with transfusions, then my doctor is going to admit me into the hospital again. I can't stand the thought of that right now!

Luckily, I dodged that bullet for today because of all your direct platelet donations. I hope to dodge it tomorrow, too. The first platelet unit I received today #LC63187 was an HLA matched unit and brought me from 7 to 16. The second unit was a non matched unit #LC63192 and brought me from 16 to 17. Thank you for all your great donations. Even Monday, I received a matched platelet unit from my mother in law! Thanks Mom. That was awesome of you.

When I checked into the lab today, they took a whole lot of blood samples from me (over 10 viles.) I know my doctor is working hard to figure out what the problem is with my platelets. I hope they find out real soon because this has gone on for a whole month. Now that I'm symptomatic, they are worried about me.

That's it for now. Thank you all for your well wishes. love you all, nancy

Hi gang! Mark took me in today again (left at 6:30 am and didn't return until 4:00 pm) and my platelets started at 5 and with one unit of platelets transfused it went to 13 (LC63144) then with the second unit, which was supposed to be an HLA Matched Platelet product, it went to 17 (LC63164). So they sent me home again with strict instructions on what to do in case of bleeding, bruising, or headaches. I also received a unit of red blood cells #LC63135 which I believe to be Judy James' unit. Thank you all for giving your precious products and for taking so much time to go to the City of Hope to donate! I know your time is valuable and I know that it is quite a drive to Duarte! Thank you, Thank you, Thank you!

My friend, Tami, sent me something that was appropriate for my need for a full-body bubble wrap. Turn on the sound. www.saab-stuff.com/pop.swf

I know a lot of you have, or are, returning to school soon. Much luck to all those in junior and senior high school. Good luck to all those embarking on their first year in college. Good luck to all those continuing with their college education. It's a very important time in your life... enjoy it and learn well as this is a stepping stone to your future. I love you all! nancy

Mark took me in today again to the City of Hope. We left at 9:30 am and didn't get home until 4:30 pm. The good news is that my white count is hovering at the low normal level by itself (not being pushed with neupogen.) My platelet count was under 5 (normal 150 - 350) again today so they transfused me with a unit of platelets. The first unit only brought me to 9 so they chased it with another unit of platelets (both LC63112) which brought it to a whopping 10 (obviously still an extremely critical level.) They said to return if any signs of bleeding or bruising occur or if I get a bad headache, go immediately to the closest ER. Isn't this comforting?

So, we decided that I need to be bubble wrapped until my appointment on Monday morning. Course, I'll go in, if need be, between now and then. Mark said he'd buy me some protective football gear, too.

Thank you for your precious donations of platelets. I'm sorry I'm killing them off so quickly.... I know, that's very rude of me. I don't know how to change all that. My doctors need to figure out how to control my platelet count. I know they will, but in the meantime, I have to be very careful! love you all, nancy

This has been a really rough week. I spent Tuesday from 8 am - 6 pm, Wednesday from 11am - 7:30 pm and Thursday from 8 am - 4 pm at the City of Hope. These days were so long... they should just put me on payroll already! My main problem is my platelets... still. Each day I received either one or two units of platelets and the next day my platelets were down to 5 (000) or less (normal 150-350.) These are extremely critical levels and I'm to watch for bleeding from my gums, nose, eyes, ears or anywhere else. Also, I'm suppose to watch for new bruises. Any signs of bleeding, I'm to rush back to the City of Hope.

They are now HLA matching platelets for me in hopes that I'll get a good boost from the transfusions and hopefully, hold onto a higher platelet count. So far, I did get a little boost but still can't hold onto the platelet count. They also transfused me via four hour IV on Wednesday and Thursday with Gammagard. This is a human blood product that contains immunoglobulins (or antibodies) to protect against infectious agents that cause various diseases. The antibodies fight infections. If a virus is responsible for the low platelet count, this should help. They need to figure out this platelet problem fast as it is very dangerous for me to be walking around with virtually no platelets. Regarding the antibodies... when I received the high dose chemo just prior to my bone marrow transplant, all of my immune system was wiped out. Because of this, when I am one year post-transplant, they have to test my immune system and possibly give me all my childhood vaccinations again. These will include Mumps, measles, rubella, small pox, and the like. I'm like a baby again... waaahhhhh

Some of you have received phone calls from the City of Hope Donor Center. Some of you are good HLA platelets matches for me so thank you for your continued donations. I've received the following units in the past week LC62784, LC62472, LC63052 and LC63040. I've also received two units of red blood cells. Sorry, I've been a little bad about keeping up with the unit numbers. I'll try and do better.

So, that is what's happening with me at this point in time. I'm sure they'll figure out the problem and then I'll be back on the mend. But, in the meantime, I have to take it easy and try not to hurt myself (I'm usually not too clumsly, but the more I try and be careful, the more I run into things.... go figure.)

The boys finally started school yesterday! Yeah... Scott is entering his last year in high school and Andrew is a junior. Where have the years gone?

Thank you for keeping up with my blog. I hope to blog with better news in the next few days. Thanks for your continued love and support! love, nancy

Yesterday, Mom and I spent the entire day at the City of Hope. My platelets were down to 6 (000) again. I received one unit of Scott's platelets. His platelets are HLA matched to mine. Since I've had such great difficulty holding a platelet count they requested that Scott come in last week in order for his platelets to be ready yesterday. I hope that his platelets will do the trick. I didn't get a huge boost from them but they may last longer. We'll see. I was also in desperate need of packed red cells. I received unit LC62357 yesterday and definitely feel much better today. Thank you for your continued blood and platelet donations.

I ran into my friend Christine Pachera yesterday at the City of Hope. She also has gone through a bone marrow transplant and seems to be doing quite well. If you are interested in viewing her website, please go to savechristine.com

Mark and the boys are taking advantage of the last weekend off of school. They headed up to Mammoth for the weekend. I hope they are having fun, catching a lot of fish, and getting in some golf. I think that was the plan. My mom is here staying with me again.

Thank you again for all your support. I'll keep blogging so you won't get worried! : ) love, nancy